Hi. I've been taking Tegretol for 3.5 years now and Tegretol with Gabapentin for about a year. The two drugs manage my pain well and I am coping well with the side fx. I take 1600 mg of Tegretol a day and 800 Gabapentin. So far, my blood tests, carbamazepine levels have been good. But of course I'd like to take fewer drugs and my neuro would like that as well. She is worried that at the age of 47, I'm already taking pretty high doses, daily, with no sign of stopping. I don't have perfect pain control and I do get periods of breakthru pain, but I wait them out and then I go back to periods of no pain. Sometimes I wonder if I'm actually in remission and taking the drugs for no reason.
I see people in this forum talking about ramping down meds, having remissions, and such. What I don't understand is how you do that, how you know what's happening.
I've had two experiences tweaking my meds. Once I tried to taper my Tegretol back and when the pain came back within a week or two, I had to increase my meds to manage the pain (like a punishment, right?) Another time, I tried to switch to Tegretol XR and same thing, when it didn't work and I switched back to regular Tegretol, I had to take more of it.
I have internalized the idea that I just can't mess with my meds because I don't want to go higher than 1600mg a day.
So my question is - how do people taper down? How do you know when you can? Does it work? Is that what it means to be in remission? If I'm coping well, should I just leave well enough alone?